Episode 4: Ageing & Autism

This is the transcript of the episode. To listen to the episode please click on your preferred podcast button.

No AI is used at any point in this podcast.

Unless otherwise specified, the research I have done for this and all episodes do not include those with intellectual challenges in conjunction with autism characteristics. While I will describe autistic characteristics in this episode, I also recognise that every autistic person will experience autism differently, and these are not specific to every person who identifies as autistic.

Due to the scarcity of research on later-life autistic people, some of the research included is more than three to five years old, a research bracket I try to maintain for this podcast as far as I can. As far as I could, the research I included here has been published within the last ten to fifteen years. Suicide comes up in the research here, so if you don’t want to hear about that right now, please wait until the next episode comes out, and mind yourself in the best way that suits you.

How old do you have to be to be ‘old’?

We don’t live in a world where ageing people are all considered wise and sources of inspiration or even respect. There are exceptions of course, but I want to be sensitive to describing ageing as some people never feel old, or feel their age because their body is failing, or because their mind is failing. Our bodies deteriorate at different rates, and lifestyle choices, mentality, community, and where in the world you are from all affect those rates. I want to discuss research that focuses on people who are considered by the researchers, society, or themselves to be an older generation. Being old is relative. If a person belongs to a neurodivergent group that happens to have a high risk of early mortality, even suicidality, than typical people from their social background and culture, they may feel old on the inside long before they look it. Or, with support, they may enter what the culture in the West considers old age with a youthful outlook even if their bodies have begun to lose their vigour. The research I’m going to talk about will include autistic participants who might be in their mid-life or older years, from menopause onwards for people who used to menstruate, and for men from their forties or fifties onwards. I’ll make it clear as I go along who the participants are from each study.

The first man to be given a positive autism assessment was Donald Grey Triplett, who was born in 1933 and died in June 2023 just before their 90th birthday. Because the neurotype of autism has been so recently recognised as a divergence where some people need low or high supports, there are many people in their older years today who may never have been offered those supports who would possibly have been given a positive assessment today. The amount of research into later life autism and many other forms of later life experiences of neurodivergence is slim, and it is even scarcer for women, non-gender conforming or Trans people. I hope to one day research the many ways autism and all forms of neurodivergence is experienced by these groups, but for now, let’s get into what we do know.

Autism and Ageing

Very few studies have been done to determine how ageing affects different neurotypes, but we do know that camouflaging or masking is a frequent aspect of being autistic, and that women appear to do so more than men for social and cultural reasons. Please see episode 2 for current research about this. If one takes into account that studies regarding neurodivergence and ageing are sparse due to some adults missing the opportunity to be assessed because of the decade they grew up in, one hypothesis may be that there are neurodivergent older adults who either do not know they are neurodivergent and who do not recognise their characteristics, who know they are but who feel supported enough by their family or community and don’t want to explore it with an assessment, or who may have recently assessed family members and are now questioning their own neurotype. Note that these are all hypotheses because without the research, it’s a guessing game. But I am guessing with an eye to some existing research that may support these ideas.

We know that autistic girls and women are fantastic maskers, camouflaging their characteristics to perform their gender as society tells them they should from a very early age, as we have seen from researchers like McCrossin (2022) who published his ground-breaking ratio of autism rates between males and females to be 3:4, for every 3 males there are 4 females assessed to be autistic. Previously it was thought males were more likely to be autistic, with a ratio of 3:1. It is actually very difficult to compare how many autistic people were included in prevalence rates in the 1960’s and 1970’s when these statistics were being collected, as the criteria for assessment was very different to those done today. Gender-specific differences and assessments were not known about, and therefore only high support autistic people were likely to be included among research participants. We mustn’t forget also that research was not global, located instead in North America and Europe in the main, and the participants would have been more often than not white and male. Researchers Boat and others (2015) tell us that only 2-4 children per 10,000 were documented as autistic in those early decades, while McCrossin (2022) tells us that today, 60 women in a thousand are autistic. I will leave it to the more maths-minded of us to calculate how many people may have spent their lives without an assessment or supports for their neurodivergence. These numbers are even more striking if we remember that far more males than females were initially assessed in the sixties and seventies. If we examine McCrossin’s (2022) statistic that for every three autistic males there are four autistic females, and compare that with the data from the last century that only 2-4 children of 10,000 were confirmed autistic, there could be an enormous amount of elderly neurodivergent men and women out there who are struggling. Or there may not be, and that is why we need to research this area, to learn from their experiences and use it to support neurodivergent people better.

Boat and others (2015) reported that gender diverse adults masked to a high level, and that receiving an assessment outside of childhood and adolescence increased the need to assimilate and compensate to a higher level as well. In this study a late assessment was deemed to be those over 17, so it could be that as age increases without an assessment, those needs increased with age, but more study needs to be done to confirm this hypothesis. They noted that those participants who self-described as a combination of neurodivergent and gender divergent may feel more societal pressure to mask than being one or the other, but again, this is an area for future research to develop.

These studies are included here to create a general idea of why there may be an older generation of masking autistics who have never received an autism assessment, and some hypotheses of how it may have impacted their lives.

Mason and others (2022) estimated that only 0.4% of autism-related research is about older people until 2012 when there was a boost of interest into the area which saw a 392% increase. However, childhood is still the most researched area of autism. Over the past decade of 2012-2022 the amount of older age autism research was still only at 1%. The research on autism tends to focus on socio-cognitive factors like physical and mental health and brain imaging, over their specific context or wider needs. Mason and others (2022) identified future research areas to be what kind of accommodation needs might arise such as forms of residential care, and difficulties forming social networks. Isolation in old age is a problem for neurotypical people as it is, let alone for autistic people who have different social needs and preferences, even from person to person, as every autistic human has their own unique set of autism characteristics. Mukaetova-Ladinska and others in their 2012 research found that old-age psychiatry services, physicians and other health professionals have reported an increase in individuals seeking help who appear to have autism characteristics but who have never received a formal assessment. They identified concerns that as the general ageing demographic increases and more services will be put under pressure from this growing population, how will services meet this need? By 2026 in the UK 1.7 million more adults will need some type of care, and at least 1% of those adults will be autistic, with or without additional learning supports. As autism assessments rise, so will this statistic, which may in fact double. Autistic older adults, with differing support needs, will face challenges such as communication and interaction, different forms of accessibility, housing issues, a lack of trained staff to facilitate supports, a lack of lifelong learning supports and adequate financial support. There are also general health problems like gastrointestinal issues, insomnia, epilepsy, autoimmune problems, and mitochondrial diseases. Many of these adults will not have their parents to support them or voice their needs anymore after a lifetime of their support, or other family members who can help. Relying on legislation and social policy acts may not help older autistic people as many existing rights for autistic people are directed to young adults, and only those with an expensive and difficult to obtain official assessment. While GPs are obliged to monitor autistic children at their practice, when it comes to autistic older adults a 2008 survey found that there is a poor standard of care, where 80% of GPs have no register of autistic adult patients, 71% provide no specific ongoing support, monitoring or condition management, and 80% of GPs require additional guidance. As surveys on autism needs do not often include ageing autistic people, Mukaetova-Ladinska and others speculated that their needs will only increase in tandem with age-related medical conditions. It appears that much of the autism research into older adults describe those in institutions, and who have intellectual challenges, but not low supports autistic people who may have flown under the radar all their lives when it comes to accessing supports. To be clear, I am not indicating they do not need supports, especially specialised ones in older age, or that they have lived an easy life. Living without supports in a society that can at times feel disabling is extremely difficult. Everyone, regardless of low or high support needs, deserves to receive support that is based on strong research and tailored to their needs. This study from Mukaetova-Ladinska and others recognised that some autistic adults were fully supported by their families during their lives to date, or held jobs that were in a protected environment, enabling them to function relatively well and did not experience an opportunity to receive an assessment because of these supportive situations. Despite this, their autistic participants reported a significantly poorer quality of life than the general population, with significantly higher levels of unemployment, anxiety, and depression in comparison with neurotypical adults of the same mean age of 47. The sample size was small of only 29 adults, and a greater sample of autistic adults would make these findings more compelling, but lifelong difficulties with employment and mental health are reported in other studies of autistic adults. One very interesting and possibly uplifting finding in this study was that over time there may be a gradual decrease in levels of characteristics, although this is a rather subjective statement to make as not all autistic characteristics may be difficult for that adult to experience but may be difficult for neurotypical others to be around. The characteristics they found to improve over time included social communication and repetitive rigid and stereotyped behaviours and interests. I find this disturbing as special interests are a source of great joy in autistic people’s lives, and I would question whether this is true, or if those older adults have learned to mask those social interests as they enter older age. However, the idea of an improved sense of social communication and a greater flexibility, as long as it does not cause stress, does sound like a positive finding.

Wright and others (2019) identified a troubling ableist use of the word ‘autism’ to describe the difficulties in intergenerational communication between those in extreme old age and younger people. For example, it was used to describe those who were neurotypical and not those actually assessed for autism, to describe a lack of adequate language between generations, rather than to describe something that is experienced by neurodivergent people. The research they found that did this, a study by Hazan in 2011, were using the word ‘autism’ as a descriptor for a lack of communication, and illustrates how some neurotypical researchers can be ableist presumably without knowing it. A wider knowledge around autism in general, and inclusion of neurodivergent researchers, would help to alleviate this ignorance.

In 2016, the UK based charity Autistica estimated there are half a million autistic adults  living in the UK, and in the same year Edelson and Bauman estimated the same figure for adults over 60 in the US (Wright and others, 2019). Wright and others correctly state that while funding and services in the States is there for autistic children, much of life is lived in adulthood, and those who are assessed as adults will need supports as well and will accrue more costs as adults than children assessed in early life. They identify that research into autism and older age participants is underfunded, and while $330 million was spent on autism in 2012, only 1% was spent on “lifespan” or autistic adults. It is my feeling that this is an ableist and biomedical approach problem, as it is my opinion that the lack of funding into adult autism reflects the medical model desire to ‘cure’ or ‘alleviate the symptoms’ of childhood autism, which is incurable and not a disease but instead a neurotype to be accommodated and supported. Funding doesn’t go into supporting autistic adults because the thinking is, in my view, that if enough money is poured into childhood autism research then eventually it will be ‘eliminated’. Autism isn’t a disease or anything to be ashamed of, it should be celebrated as a different neurotype, and research should support all human beings who are not being correctly represented.

Mason and others, in their 2021 study, wrote that autistic adults are more likely to experience premature mortality, of 12 years for autistic adults without an intellectual additional support, and for those that do will experience a premature mortality of 30 years. They speculate that one reason there is a lack of research into autistic adults may be that it is only in recent years that the first autistic children to be assessed have entered old age. They also acknowledge the ‘missing generation’ of older adults who haven’t ever been assessed, and at the time of their study publication in 2021 they reported only one research paper that examined physical health on older autistic people that found adults over 65 had elevated rates of age-related conditions such as osteoporosis, osteoarthritis, heart disease, cancer, and cerebrovascular disease. Mason and others (2021) raised the possibility that the pace of ageing is accelerated in autism, and increased the risk of age-related health problems. This research raises a possible explanation for this increase in age-related conditions from how autistic people are subject to higher rates of bullying, victimisation, and stigma, thus higher autistic traits may be correlated with an increased allostatic load, or how much harder the body must work to reduce the impact of stress to return it to homeostasis. The increase in allostatic load may accelerate ageing from being put under pressure from multiple stressor sources.

Tse and others (2022) found when researching mental health difficulties in older autistic adults, who were classified as adults over the age of 50, that they had elevated rates of psychiatric conditions, and of those especially in autistic women compared to men. There were no categories that looked into rates of co-occurring psychiatric conditions for non-binary or Trans participants, please note. This particular study within a literature review conducted by Tse and others did not explore age as a predictor of outcome, but it was controlled in the analyses, which suggests that the reported elevated rates of psychiatric conditions may be present at any age for an autistic person.

Van Niekerk and others (2011) point out that elderly autistic people may not have been assessed for autism properly as children due to the lack of inclusion of autism in the psychiatric classification system until the DSM3 in 1980 (the edition in use today  of the Diagnostic and Statistical Manual of Mental Disorders is the DSM5). Asperger’s disorder did not appear until the DSM-4 edition in 1994. They also found ,as we have seen in others’ research, that some autistic adults did not find themselves in a position to require an assessment because of a life supported in a low stress and structured environment. The major changes demanded by ageing, such as physical difficulties, changes to social structures as friends and family die, move away, or are unable to support the autistic person, and financial hardships, all combine in different variations to change the lives of autistic people as they age. Coping with change can require flexibility, something that autistic people may not have the skillset to manage alone or at all. Being put in a position where great change is inevitable, such as time spent in residential care or coping with the death of a spouse, can result in depressive or anxiety disorders.

Lai and Baron-Cohen in their 2015 paper wrote that it must be remembered that even if parents of adults who receive an autism assessment didn’t report any behavioural problems from when they were parenting them as children, the normative notions of what was ‘normal’ in a child’s behaviour thirty years ago may have changed. While Baron-Cohen, in my opinion, doesn’t have a great track record of not pathologizing autism as a disease and situates it well inside the biomedical model, in this instance Lai and Baron-Cohen concede that autism may manifest as a disability depending on the circumstances of that individual. For example, they may find themselves vulnerable to sexual and criminal coercion due to their social naivety, leading to depression and anxiety and possibly criminal prosecution. They point out that autism may only become a disability in these extreme situations, but I would argue that while these extremes are certainly evident, the multiple small examples of difference and social exclusion in daily life that add up to exhaustive masking or effort made to ‘fit in’ can be just as disabling, depending on the autistic person and their supports. You don’t need to find yourself imprisoned for committing a coerced offense to feel on the periphery of society as an autistic adult. We can both agree, however, that situating the individual in an autism-friendly environment is important.

I’m sure you won’t be surprised to hear there is not a lot of research on elderly autistic people of colour, or those from marginalised communities.

Some practical suggestions came from researchers Crompton and others in 2020: in addition to training staff for autism characteristics and supports, it should not be assumed that social time is always beneficial for older adults, and what is termed as good social interaction may be different for neurodivergent people. Care-workers should know the special interests and hobbies of their neurodivergent residents, and make sure there is space, time, materials, and supports to pursue their interests. The autistic residents should have access to wellness activities that align with their level of physical ability, and access to nutritious food that does not provide sensory discomfort. If they experience physical discomfort and need help recognising it and explaining how to alleviate it, advocacy may be needed to ensure they are being taken seriously. Speaking with clinicians may be something they need help with also, and the sensory environment of the residence may need some examination to best support that person. Future research is needed to find out how ageing and post-menopause experiences can change the sensory needs of autistic individuals throughout the lifespan. Each individual will have different needs and supports in place, and focus should be paid to strong kitchen smells, bright lights, loud noises and furniture they can use, and some may benefit from sensory inputs like weighted blankets, soothing light, deep pressure, and my personal favourites, a room diffuser and white noise machine. Autistic people with dementia may need individual thermostats in their rooms, and access to pets or support animals, and internet access. Future research may also look into the usability of decision-making and communication aids with older autistic adults, especially when it comes to end of life decisions. To quote directly from this paper, “Researchers and practitioners should collaborate to develop a best practice model of advocacy for older autistic people, involving a multidisciplinary, multiperspective team, including family members, legal experts, officially appointed advocates, professional staff working in residential care, and autistic people. This best practice framework should also clearly delineate the roles and responsibilities of an advocate, and facilitate autistic people to make an informed choice of who is involved in supporting their decision-making.” This paper was published in 2020, and they report that at the time of publication there is very little research into old age in autism in general, and non relating to older autistic adults in residential care.

Venessa Bobb, founder of A2ndVoice, activist, autism advisor, and mother to neurodivergent children, wrote in the 2019 book, Girls and Autism, that in her parent’s generation and in Black communities that autism was often seen as being slow or sick, where children should be seen and not heard. Discipline and firm boundaries were how things were, with no stepping outside the rules. I want to talk about, and talk to, research and researchers from within these Asian, Black, and minority communities about autism and lived experiences in another episode. But for now, I want to put here that there is a lack of research into ageing for autistic people from these communities, and to acknowledge that cultural differences may have shaped those experiences very differently from the majority white autistic community.

There are a lot of factors that may be included in a person’s life by the time they reach older age, such as how they have managed their personal relationships up to this point and the effects of those skills, whether they have married and had children, and if they have been able to work during their lives, something that will impact their financial situation in later life. These aspects will be addressed in upcoming episodes, and where relevant, I will refer back to these studies to draw parallels and comparisons.

Thank you for listening. Join me next episode where I will talk about autism and occupational research. The research I have used in this episode can be found cited in the show notes. I am Alexa and this has been the Neurogender podcast.

Show Notes:

Boat, T. F. et al. (2015) Mental disorders and disabilities among low-income children. 1 edn. Washington, D.C: National Academies Press.

Bobb, V. (2019) 'Black girls and autism', in Carpenter, B., Happé, F. & Egerton, J. (eds.) Girls and Autism: Educational, Family and Personal Perspectives. London & New York: Routledge, pp. 36-47.

Crompton, C. J. et al. (2020) 'Residential Care for Older Autistic Adults: Insights from Three Multiexpert Summits', Autism in Adulthood, 2(2), pp. 121-127.

Lai, M. C. and Baron-Cohen, S. (2015) 'Identifying the lost generation of adults with autism spectrum conditions', Lancet Psychiatry, 2(11), pp. 1013-27.

Mason, D. et al. (2021) 'Autistic traits are associated with faster pace of aging: Evidence from the Dunedin study at age 45', Autism Res, 14(8), pp. 1684-1694.

Mason, D. et al. (2022) 'Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go', Autism Adulthood, 4(2), pp. 164-172.

McCrossin, R. (2022) 'Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis', Children (Basel), 9(2).

McQuaid, G. A., Lee, N. R. and Wallace, G. L. (2022) 'Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity, and diagnostic timing', Autism : the international journal of research and practice, 26(2), pp. 552-559.

Mukaetova-Ladinska, E. B. et al. (2012) 'Ageing in people with autistic spectrum disorder', Int J Geriatr Psychiatry, 27(2), pp. 109-18.

Tse, V. W. S. et al. (2022) 'Characteristics of Older Autistic Adults: a Systematic Review of Literature', Review journal of autism and developmental disorders, 9(2), pp. 184-207.

van Niekerk, M. E. et al. (2011) 'Diagnosing autism spectrum disorders in elderly people', Int Psychogeriatr, 23(5), pp. 700-10.

Wright, S. D. et al. (2019) 'Autism aging', Gerontol Geriatr Educ, 40(3), pp. 322-338.